On May 28th, my sister, Edna, turned 31.
Her mental age is about three years old. She loves Winnie the Pooh, Beauty & the Beast, and Sesame Street. Even though the below picture is unconvincing.
Edna and “Cookie.” I think she was trying to play it cool.
My name is Jeanie. I’m Edna’s younger sister. I’m also her guardian and caregiver.
That’s me on the left. (Hey, you never know. After a year of writing a blog about online dating - Jeanie Does the Internet - I’ve come to learn that there are A LOT of fools on the internet.)
ANYWAY, I’m not “doing the internet” anymore. I’m taking care of Edna full-time, after completing my MFA in Writing for Screen & Television at USC.
May 16, 2014. I wanted a picture. Edna wanted breakfast.
In case you’re wondering where our parents are, they’re dead. Our mom died of breast cancer when she was just 33.
Us with mom before she died. (Obviously.)
As for our dad, he peaced-out around the time my mom got sick. His loss - we’re awesome.
Here we are being awesome at the beach. Pushing a wheelchair in the sand? Not so awesome.
In case you’re wondering “What’s wrong?” with my sister - as a stranger once asked me on the street - NOTHING. Yes, Edna has a rare form of epilepsy - Lennox-Gastaut syndrome - but I don’t know if that’s anymore “wrong” than people who don’t have manners.
Basically, Edna was born “normal,” and started having seizures as a baby. They eventually got so bad that they cut off the oxygen to her brain, causing her to be mentally disabled. Or impaired. Or intellectually disabled. Or whatever you want to call it - except “retarded,” because in 2010, President Obama signed Rosa’s Law into effect, replacing that word with “intellectually impaired.”
Which is cool and all, but services for the disabled and the people who care for them are SEVERELY LACKING. Also, there’s a bunch of people working in taxpayer-funded positions who are supposed to help families like us, but don’t. (Big surprise, I know.) They just fill out paperwork (whenever they feel like it) with asinine statements like this:
YUP. I transport my sister down the stairs in her wheelchair, because that is not only safe, but TOTALLY PRACTICAL. Why doesn’t everyone in a wheelchair just take the stairs, for God’s sake? Stop being so lazy, PEOPLE WITHOUT WORKING LEGS!
But, as it says above, Edna’s legs do work. Whether or not she wants them to, is another story.
Edna refusing to go inside.
These are the stairs that I have to carry her up - by myself - on a daily basis. That is, until one of my legs break and both of us are just sitting at the bottom of the stairs, helpless.
For six months, I have begged - BEGGED - the State of California to help my sister, which they are required by law - The Lanterman Act specifically - to do so. But they’ve told me “these things take time” and that I “need to amend my expectations.” (That was said to me when I refused to place Edna at AN ALL-MALE CARE FACILITY. Because yes, that was an “option” that was offered to me.)
Prior to Edna moving in with me in my one-bedroom apartment, she was living with her amazing caregiver, Gaby, back in Tucson, where we went to high school and I did my undergrad. Edna’s reppin’ the Wildcats below.
But back in November, Gaby also died from breast cancer. (FUCK YOU, BREAST CANCER!) This picture was taken a month before she died. She never even told me she was sick because she didn’t want me to worry.
By the way, we were raised by our grandma. Edna and her were very close.
She’s dead, too. Surprise.
She died when I was 20 and Edna was 21. That’s when I became Edna’s legal guardian and Gaby stepped into the picture to help me out with Edna.
So, six months ago, after Gaby died, I moved Edna to California, where I tried to get the folks over at The Frank D. Lanterman Regional Center to help me. I’ve told them I’m worried about our safety - that one of us could get hurt on the stairs - I’ve told them I can’t afford to pay the private babysitters $15/hour because the ones social services sent me who make $9/hour were unreliable (they didn’t show up on time or at all so I could get to school and work), untrustworthy (one of them let Edna go to the bathroom in the kitchen and then took her into the bathroom because “that what I thought I was supposed to do.”)
But the people over at the FLRC don’t return my calls, they don’t file the paperwork on time - and the first caseworker that was assigned to us actually LAUGHED AT my sister when he came to our home to evaluate her. When I reported him to his supervisor, she told me, “That’s just [insert name of said jackass].”
He was one of the two caseworkers that contributed to the report I mentioned above, which also included this:
So let me get this straight - I have to feed, bathe, dress and help Edna in the bathroom and you can’t deduce whether or not she is able to vote? What in the fuck?!
Now I realize I seem angry. And you can bet your balls I am. I’m also sad. Sad for those who don’t have family to stick up from them and who waste away God knows where, monitored by no one. Or monitored by people who physically and sexually assault them.
I’m also sad for the caregivers who are SO EXHAUSTED - trying to take care of their loved ones - while also trying to take care of themselves and battling a system that is supposed to help, but does nothing of the sort. And I know a lot of people give up. They let their dreams, their marriages, their friendships slide. All while trying not to resent the very person you’re doing it all for.
Edna wanted to sit next to me the other day while I was writing. Clearly, she’s not impressed.
Here’s the thing: I REFUSE TO GIVE UP. I’M NOT GIVING UP ON HER OR MYSELF. I’m going to pursue my dreams while taking care of her, AND while ensuring that the people paid to do their jobs ACTUALLY do them.
That’s where you come in. I need you to help me get my story out there. Because I know I’m not alone in this. I want to connect with families who are in similar situations and also show people who have no idea what it’s like to care for someone with a disability (or even a loved one who is sick) that it can be rewarding. Super fucking hard. Exhausting. Painful. Isolating. But, rewarding.
I’m going to get help for my sister - and others. My hope is that by sharing our story, I can bring awareness to the lack of services and help for the disabled.
This made me cry
STOP SCROLLING. THIS PERSON ISN’T ASKING FOR MONEY AND THIS POST WON’T MAKE YOU SAD.
This is a really uplifting and inspirational story of a family sticking by each other and making things work despite a whole lot of shit
They just want to find other people in the same position they are, for a sense of community and to feel like they aren’t alone.
I know out of all of you, some of you have followers who are living with and taking care of intellectually or emotionally disabled family members, and this lovely and unbreakable pair of sisters need to find them.
I don’t know about this “signal boost” thing, but we can definitely learn a lot from this girl.
Currently reading her blogposts.. : )
I THOUGHT THIS WAS KIDDING SOGMLASG
((Fuck, I’m on mobile))
If you your on mobile you can just hold the reblog button down
so my sister had homecoming last weekend and all the guys in her group secretly decided on undercover superhero identities and wore the corresponding colors to match the shirts underneath and revealed them during this picture and it was perfect.
THE HELLO KITTY ONE.
Im sorry but if you dont love this im judging you to hell i want this to happen me so bad omfg
I respect you hello kitty dude, I respect you a lot
Look how badass he is while holding that baby
But what if he used it on the guy who came to the door for his daughter?
TELL ME, MIDGARDIAN. WHAT ARE YOUR INTENTIONS TOWARDS MY DAUGHTER?
I AM OBLIGED TO INFORM YOU NOW THAT ANY DISRESPECT TOWARDS HER SHALL SURELY END POORLY FOR YOU.
WHOSOEVER DATETH MY DAUGHTER
IF HE BE WORTHY
THE BLESSING OF THOR
and watch when the time comes, he’ll just be like “Hey, mate, treat her good okay? Bring her back before eleven please. Drive safely.”
I THINK WE HAVE TO WORRY MORE ABOUT HER GODFATHER, TOM LOKI HIDDLESTON TBH.
What the hell.
This is the greatest post in the universe.
jesus christ it’s updated
Rebloggin for the comments.
JFC Tumblr, I can’t take you anywhere.
I love you
ALL of you
this shit just keeps getting better!!!
Dear lord this girl is going to have the hardest time getting a boyfriend. The poor thing is going to come home, stomp up to her room, try to slam the door, but it’ll be impossible because Chris Hemsworth will effortlessly stop the door with his huge Norse God arm.
And she’ll be like “DAD! YOU SCARED HIM AWAY!”
“I DID NO SUCH THING, MY DEAREST DAUGHTER. I ONLY SPOKE TO HIM THE TRUEST TRUTH OF THE NINE REALMS.”
“Oh my god, dad…”
“HE HAD AN ILL LOOK ABOUT HIM, I LIKED IT NOT. YOU ARE DESERVING OF THE HIGHEST OF QUALITY IN MEN, NOT THE LIKES OF HIM. YOU HAVE A DUTY AS PRINCESS OF ASGARD TO MARRY WELL AND SERVE THE KINGDOM, AND I ALSO WISH THAT YOU MAY HAVE A HUSBAND WHO WILL TREAT YOU AS THE QUEEN YOU ARE.”
“Dad… I’m not a queen! Stop it!”
And then Tom Loki Hiddleston, her godfather, walks in and she’s like: “And YOU! YOU SCARED HIM, TOO!”
“Oh, I did? My mistake. I overestimated the bravery of the young man, I fear.”
“WELL DONE, BROTHER.”
“Dad! Uncle Tom! SHUT UP! YOU’RE NOT EVEN REAL BROTHERS!”
“I fear your daughter is saying hurtful things in her anger, she means them not, I think. Worry not, Thor, I had trouble with my children more than once…”
“UNCLE TOM YOU DON’T HAVE ANY KIDS!”
“BROTHER PERHAPS WE SHOULD LEAVE HER TO HER ANGER.”
“No, wait! You guys have to stop doing this, I’m never going to get a boyfriend if you keep doing this!”
“Oh, alright. We shall never again berate or intimidate the young men whom you present to us. I promise.”
“UNCLE TOM STOP TALKING LIKE THAT.”
“Darling girl, my name is Loki, God of Mischief, Silvertongue, Lord of Lies. I know not of this Tom you speak of.”
“YES, MY DEAR. YOUR YOUNG MEN SHALL BE SAFE FROM ANY SO-CALLED WRONGDOING OF OURS.”
“WHAT IS IT, DAUGHTER?”
“Never mind. Thanks, good night.”
#And then the next day Tom and Chris are in full costume#helmets and all#with their scepters and their capes#And she brings in this young guy#and they open the door#And there’s her father and her godfather#Tom smiling his ovary-bursting smile#you know the evil one that’s also strangely sexy#And Chris has his hammer at the ready#and they greet him#calling him a suitor for the hand of the princess of Asgard#talking about how he’ll need to complete nine Trials to prove himself worthy to have her as his queen
but this just keeps getting better and better
EACH TIME I SEE THIS THERE ARE MORE WONDERFUL COMMENTS
OMFG DIS POST. DEM COMMENTS /dying
It gets better every fucking time!
I am CRYING oh my god
[[And there will be that one guy.
He won’t run or never call again.
He’ll sit there and play along.
“I, (insert name), swear on my very life that thine daughter, thine princess of Asgard shall return safely to you. My very life be forfeit at your hands if it be otherwise.”
It’ll be RDJ’s kid. His dad will have warned him about this long beforehand and quizzed him on it.]]
I didn’t even think it was possible for this post to get any better. Thanks for proving me wrong.
*oh I can’t breathe*
I CANNOT WITH THIS POST
Can we somehow in some fashion arrange as a fandom to send this post to RDJ, Chris Hemsworth, and Tom Hiddleston, please
#forever grateful for oberyn martell#the only character who consistently criticised and fought and raged against the all-pervasive culture of rape & sexual sadism#and who sought retribution for the rape of his sister not because it brought dishonour to his family#or sullied her femininity#but because it was a heinous violation of a human being that got buried in silence#he was determined to give voice to it; and to keep giving voice until it couldn’t be ignored any more#to be as unflinching and ruthless and relentless as the man who brutalised the person he loved#jfc the show needed this embedded voice of resistance so badly; one voice against a tide of complicity and complacency#[this character was everything this performance was everything i’m so fucking torn up about it] - tags by elucipher
#oberyn martell,#game of thrones,#better than all of you
I’m a paradox. I want to be happy, but I think of things that make me sad. I’m lazy, yet I’m ambitious. I don’t like myself, but I also love who I am. I say I don’t care, but I really do. I crave attention, but reject it when it comes my way. I’m a conflicted contradiction. If I can’t figure myself out, there’s no way anyone else has.